I have an appointment in 2 weeks with my Rheumy and I can feel my blood pressure already rising. At my last appt in September, he dropped the fibromyalgia bomb on me. I think he was frustrated that I was having a flare and wanted to blame something other than RA. Well, I have since obtained my medical records and in the notes from September, he states that I suffer from fatigue (true), difficulty sleeping (true), innerstitial cystitis (lie), migraines (lie), depression (lie), tmj (lie), and any other indicators for fibro (lie). I am still furious about it. I have since had an MRI of the hand to prove RA. I want to confront him about the false statements in my record, without being bullish. I hope we can come to an understanding and continue in a more mutual care plan. Anyone have luck with this? Any advice would be most welcome.

34 Replies

Hello there I was the same my CRP was 270 and she tried to blame it on the oestoarthritis which is complete bollocks they must think we are all stupid, then my wife who was with burst out crying and she tried to change course, so as soon as I came out off the appt I told my reumy nurse ( who is an angel) I told her I wasn't happy with her attitude , and wanted to see another reumy in future

I am hoping that I can discuss the matter with a cool head and that our doctor/patient relationship can improve with mutual understanding. My next option would be to travel an hour and a half for every rheumy appointment. I hope that won't be necessary, but I will do it if I have to.

Maybe write out an outline of what you want to say, or say it to your significant other or friend so you can get their feedback if it comes across offensively. And if you are a Christian, then pray for clarity and peace before you go in to the appt., that helps me tremendously so I don't come across attacking or blaming the doctor.

Take a list and go through pong by point. Also take someone with you . You need to have a professional long term association with the Rheumy so tell him that and that you don't agree with his letters. Also get him to give you a definite diagnosis and treatment plan and ask for a copy of the clinic letter.

I agree. Do you think perhaps when it came to making up your notes he could have mixed you up with another patient? Or does someone else type up his notes and maybe there was an error there If you go through notes point by point you can tell him the facts are not correct.

I think he was talking about me, but he based everything on the fibro quiz which he sprung on me at that appt. Of course I will score high if I am having a flare! The only other thing he asked about was headaches, to which I said that I rarely get any. I can't wait to see him again so I can set the record straight! (In a nice, but forceful way!)

Previous to this, my diagnosis was seronegative rheumatoid arthritis. I am using Enbrel, which has been a wonder drug for me. Unfortunately, (and coinciding with my appt in Sept), I had a bad batch or poor handling of the pens which caused a flare. I am now feeling good except for the occasional ache or bought of fatigue. Thankfully, with the MRI results, I can continue the Enbrel!

I understand your fury. I see my new rheumy for the second time tomorrow and it took him 3 months to write his clinical letter to me after I saw him four months ago. I'm far from furious with him so far but he did misunderstand some of my recent history quite badly. He kept referring to acute cholecystitis - which I could understand but it was simply wrong. I never had cholecystitis.

And this really bothered me because what I did have hospitalised me twice last year and was much more serious. And the hospital discharge sheets state that I had a UTI sepsis and a drug allergy plus possible Vasculitis - all of which may very well be relevant to my presentation of RA. However, like you, I'm determined not to give these doctors any excuse to land Fibro on me.

So I wrote a very hot headed letter to him and then sent it to a few friends from HU for their advice and suggestions with editing it. They were brilliant and pointed out that it was far too long and rambling and would serve the opposite purpose to what I wanted.

So having got my feelings off my chest I re-wrote it and sent him a very understated but factual letter explaining that I've never had cholecystitis and describing exactly what occurred - all of which can be evidenced by reading my hospital notes.

I think this will help him to see that I'm a lucid person and understand enough about my condition(s) that I won't be fobbed off - in case he is tempted to do just this. I don't know what he will make of it but I treated it like the contents sheet of a book. Part one explains why I was hospitalised four times last year and part 2 gives a bullet point list of what I want to discuss tomorrow.

Perhaps you should do this too because if it's all written down they have to put it on your notes and you can be as coherent as you need to be in order to get your point over? It's also a good way to deal with the fury your rheumys letter has generated in you. Twitchy x

Thank you, Twitchy! Your advice to write it all down in a letter to present to the doctor is good. I think I will do that if I can get my thoughts together. I do have bullet points in my phone that I want to discuss, but a hard copy in my record will definitely make me feel better. Being fobbed off is exactly how I felt. Some doctors apparently don't think that their patients might be very well educated about medical conditions. I hope I can "understate" effectively!

Be aware you need to *send* your list to the doc by post or email, not just give it to him. A few years ago when my symptoms started and I was trying to work out what was going on, and my old GP was treating me like a hyperchondriac, I wrote a list of all the weird things that had started happening to my body in the previous 2 months and the previous year. I gave it to her at my consultation; she looked at it but didn't seem v interested to be honest... A couple of years later, when I changed GPs and discovered I needed a hip replacement and that she had failed to notice, I requested my medical records... There is absolutely no record or mention of the list I gave her...!

Many doctors are trained to "deal with" confrontational patients, so do be careful as getting too confrontational could bring down the shutters - which is not what you want. I know it's hard to swallow your anger & irritation when you're the one that has been messed about but do try. Personally I've found that taking a hurt or misunderstood & disappointed line seems to work a lot better. As in "I've been thinking about what you wrote in letter to GP and am a bit confused as this doesn't match what I thought we'd discussed, and am feeling quite hurt by this.. It would really help if you could go through it with me etc etc.

Underneath it all I hope that doctors are doctors because they care about helping people, so try to trigger that caring response over you. Yes as others have said you have to be assertive about pushing for your treatment, but take lots of calming deep breaths and just be quietly persistent about it, not loudly angry.

In the early days I had a bad relationship with my rheumy nurse, who I found quite patronising. Anyway, I bit my tongue and worked on being as sweet as pie - and we now have a great relationship and she's very responsive when I do need something.

Thanks so much, helix! You offer very good advice. I do want to avoid being confrontational. I think we can come to an understanding and proceed with a good relationship. I will be praying about this for sure. My tongue might be a bit sore by the end of my upcoming appointment!

I would just say that I was a bit concerned that there were some wrong things in my notes that could impact negatively on my future treatment and ask if he could go through them with me and correct them while I was there. If he wasn't willing to do that, I'd politely ask whether this was something that would be more appropriate to do with the patient advocacy people, as it really did matter that there wasn't false information about my medical history as it could become a big problem in the future.

I have an appt scheduled with another rheumatologist in February. I am looking forward to starting over with a doctor who can begin at the beginning! But if I can come to an understanding with my current doctor, I will be satisfied and continue to see him. Let's hope for a good outcome--one way or another.

Although I agree that the last thing that you want is a confrontational consultation, I do think you have to make it clear that you are not happy, and want errors rectified. I would definitely recommend taking someone with you, and to make it clear that they will be taking notes. If that is impossible, take notes yourself, and say that you are.

Have a list of everything you want to discuss, and work through it, trying not to be diverted. Try to keep your cool, but be firm and take control of the conversation.

Thank you, hatshepsut! I do want a good outcome and plan to be somewhat forceful if I need to be. I am easily brought to tears, though, so I will have to work hard to maintain my composure. I don't think anyone will be able to go with me, so maybe I should record the meeting! Then the doctor will behave himself--and I will too!

I say, make a formal complaint via PALS if there were fatal flaws in your letter (I did). Drs are highly paid for what they do, we pay our tax, we are paying them. If they are not up to scratch, then someone better should be doing the job. Not point of massaging any poorly performing Drs' ego, if there were errors, best to say as they are. Rubbish job should be addressed via PALS. That's how we shape our service. It is quite likely there were other people who had the same issues with these Drs. More willing you are to make complaints, better our service would be.

I understand your frustration! I have had a similar experience with the rheumatologist I am seeing at the moment...

When I had my first appointment with him, he clearly did not think I had RA (I am sero-negative and my inflammation is not very visible, though it has already caused some erosion and other damage) and decided for some reason that I have fibromyalgia, despite the fact that I was only sore at 2 of the 14 'trigger points', and he agreed with me that FM is a 'diagnosis of exclusion' that should only be given when all other explanations for pain have been ruled out. He was so sure of his opinion that he actually wrote to my GP saying I had OA + FM and not RA *before* I had the ultrasound and MRI tests he'd referred me for... So when the ultrasound showed inflammatory arthritis, he had to write again changing his diagnosis, but he 'forgot' to send this letter to my GP and only sent it to me! I am generally assertive and articulate (though like you I have a tendency to cry when I confront people about things I'm unhappy with!) and had already challenged him in that first consultation for not listening to me, so by this point, I had a very poor opinion of him - and he was probably pretty wary of me too!

At my next appointment with him, I was tempted to challenge/confront him, like you are. HOWEVER, I asked myself what I wanted to achieve, and the answer was **effective treatment for the inflammatory arthritis that had now been formally diagnosed**. SO I decided to bide my time and see whether he gave me what I wanted... And he did: he told me his diagnosis and planned treatment, offered me a steroid depo injection, started me on hydroxychloroquin, said he'd review me in 3 months, and passed me into the care of the rheumy nurses meanwhile. All this seemed reasonable to me, and I made the decision that confronting him would not change or improve what happened, so I didn't. In general, I think that confrontation doesn't usually get the best out of a situation - it is almost always more effective to try to use other tactics first, and only confront if you are not getting what you need.

You are in a similar position now, so my advice to you would be to decide what you want out of this next appointment with him, and do what you think will be most likely to get you that. Do you want to continue with the same treatment? Then challenging him might be necessary if he suggests changes, but might not help if he doesn't... Or do you want specific changes? Then your best tactic might be to ask directly for them first, and only talk to him about the mistakes in his letter afterwards, if/when it still feels necessary...

I would add that just because I didn't confront my rheumy last time, it doesn't mean I can't next time. If he is an arse again, I may tell him next time! Meanwhile, because I don't quite trust his judgement, I have taken certain other steps, including: talking to my GP about what had happened (he was shocked not to have been sent the second letter) and saying I was not entirely happy with the rheumy; checking online and with the GP too that hydroxy was a reasonable first treatment for me; being satisfied with my experiences with the rheumy nurses; researching places that I might get a second opinion if relations with this rheumy don't improve; and feeling like the treatment I am getting now is actually improving my symptoms... I ruled out making a complaint about him, although I would quite like to, because I don't actually think it would help me right now.

By the way, I decided to 'park' the question of whether or not my medical notes said I had fibromyalgia, because (a) it wasn't changing the treatment I wanted and was getting, and (b) it didn't seem to be doing me any harm, and maybe it will turn out to be true that I *also* have it (though I'm not convinced!)

Finally, I find it helps me to keep thinking "What do I want/need now? Is this helping? What else could I do if this isn't working?" You might find it helps to ask yourself similar questions and come up with some other options for your own situation... RA can make us feel very out-of-control and it can be useful to 'reclaim' some sense of control sometimes! Good luck!

Thank you so much for sharing your experiences and your thoughtful perspectives. They are much food for thought. I will be praying for a clear head and and wisdom as I prepare for my recheck. I have already made an appt for a second opinion in February. No matter how my recheck goes, at least I have a backup!

Can you be seen by another doctor?..I am not proud to admit this, but I have been the victim of 2 horrific doctors when I was in my 20's (nothing to do with Ra) in my past. The best advice I can give you is to get a second opinion. Do not let an incompetant doctor "pinhole" you into a catagory. Find a new doctor.

Fortunately, I was able to get into another rheumatologist for a second opinion, but that appointment isn't until February. Whatever happens, at least I have that hope for a new start!

a year agoHidden

Good for you for requesting to see the documentation. Now to sit down and write your account of the visit and give it to the Doctor & the office to put in your record. As frustrating as it is, we often don't have other choices so getting angry at them doesn't probably help. Good that you are getting more evidence in support of the RA & you will have this to include in your story.

Speak to your PALS dept at your hospital about getting those statements taken out of your records. I have ra and i also have fibro and cfs as well and you could have ra as well as fibro so don't get too alarmed. Take someone with you so they can take notes and record the session if allowed and say you are recording what they say so you can remember what was said as you won't remember half what was said to you.xxxx

PALS work in the capacity of being an advocate for patients too. They can go along with Patients to appointments to help them with any issues they may have and support them. This can work well and 're gaining a patient trust of a Dr. Also to make a Dr aware he may not be giving the right impression at his Consult. Sometimes Dr s do get over worked and do not do things right. They are human like us and have bad days. I am not saying he was right or sticking up for him.

Thank you, moomie and sylvi, for your perspectives. You are so right that doctors have bad days. I want to handle this properly and not burn any bridges. I am from the US and wish we had PALS available here. I am hoping that I don't have to go to further lengths, but that our conversation will be most positive at my appt. Thank you all for the wise advice and encouragement!

I feel your frustration as I have a similar issue with this. I had none of the above FM symptoms. .......Well except the fatigue and poor sleep caused by active arthritis (funny that😐) No tender points either, Yet Fibromyalgia was diagnosed without excluding anything else. For me this ended up problematic as a serious complication of uncontrolled inflammation was assumed to be a ' just fibromyalgia symptoms' Long story short it ended in hospital Stay + bad times. Its so important the information on medical records is correct otherwise things can be overlooked!